Jump to content

  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.



  • Celiac.com Sponsor (A1):

    Celiac.com Sponsor (A1-M):

  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Mom Of 15 Month Old With Celiac Disease

SDevanney

Recommended Posts

SDevanney Newbie
SDevanney
Posted

On Thursday, July 19th we were told our 15 month old son suffers from celiac disease. (blood test came back poitive) Can not get an appointment with GI Specialist until 9/27/07. What do I do in the mean time?

Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8-M):


Nic Collaborator
Nic
Posted

Hi, this is a tough one because the GI will probably want to do a biopsy which means you would have to keep him on gluten until then. The biopsy will only come up positive if he is eating gluten. Unless you are not willing to do the biopsy and are going to rely on the blood work for your dianosis which a lot of people do. Maybe you could call the GI office and explain that your son tested positive through blood and since your appointment isn't for another 2 months, what do they want you to do. Sorry I can't offer more.

Nicole

SDevanney Newbie
SDevanney
Posted
  • Author
Hi, this is a tough one because the GI will probably want to do a biopsy which means you would have to keep him on gluten until then. The biopsy will only come up positive if he is eating gluten. Unless you are not willing to do the biopsy and are going to rely on the blood work for your dianosis which a lot of people do. Maybe you could call the GI office and explain that your son tested positive through blood and since your appointment isn't for another 2 months, what do they want you to do. Sorry I can't offer more.

Nicole

Thanks for the advise.

kbtoyssni Contributor
kbtoyssni
Posted

If the blood test is positive, then he has celiac. There is no reason to do a biopsy unless there's something in addition to celiac that the doctor wants to look for. Many in the medical community consider a biopsy the "gold standard" of diagnosis, but you really don't need one if you have positive bloodwork. And a biopsy can often come back negative, too, especially in young children who haven't had enough time eating gluten to develop lots of intestinal damage (which is a good thing!). At this point you have a choice to make: keep him on gluten and wait for the biopsy or go gluten free now and start the healing process. Some people need the biopsy and its additional proof that he/she has celiac in order to 100% commit to a gluten free diet. If you're someone who is satisfied with the proof you already have, then I see no reason for a biopsy.

shayesmom Rookie
shayesmom
Posted
On Thursday, July 19th we were told our 15 month old son suffers from celiac disease. (blood test came back poitive) Can not get an appointment with GI Specialist until 9/27/07. What do I do in the mean time?

In a 15 month old, I would think that positive bloodwork would suffice. The GI will most certainly want to biopsy to verify the bloodwork (though I don't really see the sense as the bloodwork is highly specific to this disease).

Considering your son's age....you have to look at the symptoms he's having and make your determination from there. How sick is he? What has led you down this road of testing? And how quickly do you want this resolved? Can your son (and you) wait another few months in order to have two doctors concur that celiac disease is the problem?

I was once in shoes similar to yours with my dd. But my dd's bloodwork came back negative and we declined the biopsy. We opted to give the diet a try as it was the safest and least invasive way to go. The results were amazing. And I can honestly say that I wanted to kick myself in the rear for not finding out about this sooner. Up until then, I never knew what Celiac was...much less suspected it was a problem! When I think of all the pain my dd must have been in....and then all of the hedging the doctors were doing and how they discouraged me from even trying the diet. It's infuriating.

In any case, this decision is a very personal one to make. Don't let anyone pressure you into anything (be they doctor, friend or relative). Follow your own heart and mind. You know what is best for your son and I'm sure that you'll uphold what is in his best interest.

amberleigh Contributor
amberleigh
Posted

I'm sorry to hear that (((HUGS))). I know most of their diet at that age is GLUTEN as I have 2 daughters around that age.

I found out I have celiac disease a bit over a week ago and we decided to have the kids tested even though they don't really show symptoms for it. Our Ped GI does the bloodwork and then if that is positive, they do the scope as well. My husband doesn't really want to put them under anesthesia, but the nurse I talked to said that since it's such a restrictive diet, they like to be 100% sure with the scope. It makes sense to me and I agree with it but we'll see what we do when we actually get to that point (our appt isn't until 8/15).

When my blood test results came back positive, my GI told me to continue eating "normally" until the scope, which I did. Then when the scope confirmed it, I went gluten-free. However, I wasn't all *that* sick...so I guess it depends on how sick your kiddo is.

Hope that helps a little and prayers to you and your son!

Archived

This topic is now archived and is closed to further replies.

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. cristiana
      - cristiana replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK. Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs. If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend...
    2. trents
      - trents replied to Dizzyma's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods". Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy...
    3. Dizzyma
      - Dizzyma posted a topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      2

      Newly diagnosed mam to coeliac 11 year old

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her on a full gluten free diet. my concerns are that she wasn’t actually physically s...
    4. Scott Adams
      0

      Better-Than-Takeout Gluten-Free Chicken Fried Rice

    5. Kimmy88
      - Kimmy88 commented on Scott Adams's article in Winter 2026 Issue
      2

      Gut Healing After a Celiac Diagnosis: What Science Says About Recovery Time (+Video)

      Excellent article!! I shared with my family, so they would understand!
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      132,920
    • Most Online (within 30 mins)
      7,748
    MLSpade
    Newest Member
    MLSpade
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.5k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • cristiana
      Newly diagnosed mam to coeliac 11 year old

      By cristiana · Posted

      Hi @Dizzyma I note what @trents has commented about you possibly posting from the UK.  Just to let you know that am a coeliac based in the UK, so if that is the case, do let me know if can help you with any questions on the NHS provision for coeliacs.    If you are indeed based in the UK, and coeliac disease is confirmed, I would thoroughly recommend you join Coeliac UK, as they provide a printed food and drink guide and also a phone app which you can take shopping with you so you can find out if a product is gluten free or not. But one thing I would like to say to you, no matter where you live, is you mention that your daughter is anxious.  I was always a bit of a nervous, anxious child but before my diagnosis in mid-life my anxiety levels were through the roof.   My anxiety got steadily better when I followed the gluten-free diet and vitamin and mineral deficiencies were addressed.  Anxiety is very common at diagnosis, you may well find that her anxiety will improve once your daughter follows a strict gluten-free diet. Cristiana 
    • trents
      Newly diagnosed mam to coeliac 11 year old

      By trents · Posted

      Welcome to the celic.com community @Dizzyma! I'm assuming you are in the U.K. since you speak of your daughter's celiac disease blood tests as "her bloods".  Has her physician officially diagnosed her has having celiac disease on the results of her blood tests alone? Normally, if the ttg-iga blood test results are positive, a follow-up endoscopy with biopsy of the small bowel lining to check for damage would be ordered to confirm the results of "the bloods". However if the ttg-iga test score is 10x normal or greater, some physicians, particularly in the U.K., will dispense with the endoscopy/biopsy. If there is to be an endoscopy/biopsy, your daughter should not yet begin the gluten free diet as doing so would allow healing of the small bowel lining to commence which may result in a biopsy finding having results that conflict with the blood work. Do you know if an endoscopy/biopsy is planned? Celiac disease can have onset at any stage of life, from infancy to old age. It has a genetic base but the genes remain dormant until and unless triggered by some stress event. The stress event can be many things but it is often a viral infection. About 40% of the general population have the genetic potential to develop celiac disease but only about 1% actually develop celiac disease. So, for most, the genes remain dormant.  Celiac disease is by nature an autoimmune disorder. That is to say, gluten ingestion triggers an immune response that causes the body to attack its own tissues. In this case, the attack happens in he lining of the small bowel, at least classically, though we now know there are other body systems that can sometimes be affected. So, for a person with celiac disease, when they ingest gluten, the body sends attacking cells to battle the gluten which causes inflammation as the gluten is being absorbed into the cells that make up the lining of the small bowel. This causes damage to the cells and over time, wears them down. This lining is composed of billions of tiny finger-like projections and which creates a tremendous surface area for absorbing nutrients from the food we eat. This area of the intestinal track is where all of our nutrition is absorbed. As these finger-like projections get worn down by the constant inflammation from continued gluten consumption before diagnosis (or after diagnosis in the case of those who are noncompliant) the efficiency of nutrient absorption from what we eat can be drastically reduced. This is why iron deficiency anemia and other nutrient deficiency related medical problems are so common in the celiac population. So, to answer your question about the wisdom of allowing your daughter to consume gluten on a limited basis to retain some tolerance to it, that would not be a sound approach because it would prevent healing of the lining of her small bowel. It would keep the fires of inflammation smoldering. The only wise course is strict adherence to a gluten free diet, once all tests to confirm celiac disease are complete.
    • Dizzyma
      Newly diagnosed mam to coeliac 11 year old

      By Dizzyma · Posted

      Hi all, I have so many questions and feel like google is giving me very different information. Hoping I may get some more definite answers here. ok, my daughter has been diagnosed as a coeliac as her bloods show anti TTG antibodies are over 128. We have started her  on a full gluten free diet. my concerns are that she wasn’t actually physically sick on her regular diet, she had tummy issues and skin sores. My fear is that she will build up a complete intolerance to gluten and become physically sick if she has gluten. Is there anything to be said for keeping a small bit of gluten in the diet to stop her from developing a total intolerance?  also, she would be an anxious type of person, is it possible that stress is the reason she has become coeliac? I read that diagnosis later in childhood could be following a sickness or stress. How can she have been fine for the first 10 years and then become coeliac? sorry, I’m just very confused and really want to do right by her. I know a coeliac and she has a terrible time after she gets gluttened so just want to make sure going down a total gluten free road is the right choice. thank you for any help or advise xx 
    • xxnonamexx
      Fermented foods, Kefir, Kombucha?

      By xxnonamexx · Posted

      very interesting thanks for the info  
    • Florence Lillian
      gluten free cookie recipes

      By Florence Lillian · Posted

      More cookie recipes ...thanks so much for the heads-up Scott.  One can never have too many.  Cheers, Florence.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.